Has anyone had any difficulties with their breathing since being diagnosed with hypothyroidism? I've recently been sent by my Rheumy for a pulmonary lung function test a month ago which she has only advised me was poor and would retest me again in 2 months. No explanation or anything.
I don't think I've ever had much "puff" but do get out of breath talking walking climbing stairs etc but wondered if this was just my fatigue or anxiety.
Wondered if there's a link between the two? Rheumy seem to want to blame everything on my thyroid and refer back to my Endo.
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MissFG
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MissFG I started having trouble with breathing a few years ago (almost 40 years after being diagnosed hypo), sent for full lung function tests (plus heart) and ended up with a diagnosis of COPD. However, since having a CT scan the consultant has now diagnosed Bronchiectasis - still a progressive lung disease and apparently it can be caused by lung damage following certain childhood illnesses such as whooping cough, measles, pneumonia. Like you, I never had much puff, could never run without getting very out of breath. Shame it took so long to find out what it was, but I just thought that's how I am!
So, certainly breathlessness can be associated with Hypothyroidism, but if they're looking for other causes as well that is good.
Ooh really that's interesting! I have never been able to run as I hyper ventilate. I've just had my echocardiogram Friday. Was all ok with heart tests?
My dad has COPD but he's smoked since he was young. So don't think there's a link there at all.
If my next lung test is the same will they investigate further or leave me? I know I'll only worry if they just keep leaving me and just retesting periodically especially when I'm complaining of difficulties breathing and getting out of breath
The heart test I had was a stress echo cardiogram (supine bike) which showed hypokinesia of 1 out of 17 myocardial segments. I was told I may have minor coronary disease but the test showed low risk, basically a weak muscle. Even though there is a poor heart history in my family I don't worry about it, I can't change it and it hasn't been flagged as a problem. Mind you, if cardiology is anything like endocrinology then I'm totally up a gum tree
What lung tests did you have? Big machine with various breathing manoeuvres? Big glass box? Did it take 30-60 minutes altogether? That would be the full lung function tests. Or just spirometry?
If you've not had the full tests (you can Google for full lung function tests, some area's hospitals describe what is involved), then I would ask for them, also ask for a CT scan.
If I had been left with the initial diagnosis of COPD and not been referred to a respiratory consultant following pleurisy, pneumonia and several flare ups of colonised pseudomonas, then I would not have had the scan and diagnosis of bronchiectasis.
My GP (who has a special interest in lungs) guessed it might be bronchiectasis but it was the scan that provided the proof. It's not changed my treatment at the moment - two inhalers (bronchodilator and a long acting reliever), plus maintenance antibiotic three times a week to try and prevent infection, but it's actually good to know what it is and when a doctor or nurse brings up the fact that I used to smoke donkeys years ago (and basically blames me) I can now say that it can be caused by damage to lungs from childhood illnesses and think to myself 'up yours'
I would certainly following up in your shoes, we Hypos have enough to put up with!
I had the ultrasound on my heart and the lung test was about 45 mins lots of tests repeated 3 times which were all consistent. I found the gas blown in particularly painful but didn't know if it was the same fir everyone. As far as I was told it was the full lung function test. Least I'm back again in 2 months although I think the results will be the same as I tried my hardest.
I thought I might as my gp to access the results on the computer systems and see what they've said? Would it be worth asking my gp for a ct scan? They are good but can fob me off with the fact I'm under the hospital. But it's months before you get back in even if your appt should be 3 months it ends up being 5 as they're just so busy.
Only positive thing is this is all more evidence for my PIP application
You could ask your GP about the scan, I don't know whose decision it is at the end of the day. My GP just referred me, didn't consider it urgent, but I was so ill that I went private to the same consultant in the end (I've just actually had the NHS appointment and it's taken 12 months) and it was the consultant who ordered the CT scan. The scan was done as an NHS patient (he transferred me back to the NHS after my initial appointment) and I think I waited 2 months for the scan.
I wonder why they're repeating your lung function tests. I wonder what they meant by they were poor? I wonder if they mean you didn't perform them very well so they're not good enough for a diagnosis, or your actual lung function was poor. If the latter, then repeating the same tests seems a bit of a waste, they should go on to further diagnostic investigations surely. See if your ago can find out, and if it's your lung function that's poor then ask about a scan. He might be able to speak to the consultant about arranging one.
PS - just remembered. When I saw the consultant last week, he showed me the scan, explained what it meant, then arranged a blood draw to check for some antibodies, he said there were three tests. Now I don't know what antibodies he means (I must remember to ask on the lung forum) but I don't have thyroid antibodies, I have tested mine and they have been low about 5 times now.
He might mean the ANA antibodies. I've tested positive for it and got a diagnosis of connective tissue disease and having treatment for potential SLE. Which I think affects organs and muscles hence why Rheumy requested the lung and heart tests. I've also got a weak positive for myotosis but again I just get dismissed. Doesn't matter how sick I feel my consultant just said I'm a worrier n I'll be fine! So not much help. Least if we do get positive results it helps with getting a diagnosis and treatment otherwise I'd be at a loss.
I'd suggest (and am not medically qualified) you ask for a trial of T3. It is T3 which is the active hormone and without sufficient (either converted from levo or T3 added). Breathing problems are horrible (my Father had difficulties). Some do fine with T4/T3 on a basis of 3:1 combo. On the other hand some people cannot get on with levo and take T3 only or switch to NDT.
I've been treated for 16 months and I'd say it's actually getting noticeably worse not better but could be other autoimmune issues it's just so difficult to tell with everything going on
When the poor function is due to hypothyroidism it will usually improve when thyroid levels are improved. If it is due to other conditions then thyroid replacement isn't likely to make any improvement.
Sorry if others have already said this but shortness of breath can be a result of low iron/ferritin so that might be worth checking. You'll know ferritin levels need to be good for your thyroid function.
Also, it might be worth finding a very good yoga teacher if you'd enjoy that. My daughter's just been told she is in the top 10% of people who can be expected to live a long and healthy life based on her lung function test and she puts it down to having done yoga with me (I teach and include a lot of breathing).
I've said this to both my Rheumy last week and gp yesterday. So having bloods done Thursday. Can I check is it not a fasting blood test as my gp said not? So I'm in at 12. I suffer with low in rants ferritin and I feel anaemic but I know if I'm low in range they'll say I'm fine even though I feel dreadful faint exhausted and I don't think it's my thyroid I think I'm low in iron
Ooh I'm starting yoga next week and swimming at my local gym I'm trying to go on the keto diet too it's just hard when your so tired and fed up finding the motivation
Sorry but I don't know about the fasting blood test, others will tell you if you ask, I know the fasting affects the thyroid results but as far as I know not ferritin.
Clutter will be able to tell you where in range your ferritin needs to be for thyroid function if you ask.
Many yoga teachers don't understand the breathing though they think they do so I'd recommend trying out a few teachers to discover. You should be gradually progressing in what you learn to do with the breath, each term and for many years and you should learn many different things to do with the breath. If you can find a teacher who learnt from a man called Phil Jones that would be excellent, he was a miner with emphysema who lived decades beyond his life expectancy after going to India and learning pranayama and breathing from a Yogi, then he came back to the UK and taught us and now some physios teach a litte of it too. You'll need an older teacher to have a chance of that.
Also, take care not to over-work as that can use up your T3.
Strange how since I lowered my T3 2 nearly 3 weeks ago I've got many symptoms back like jelly legs and felt faint. So I'll see what my vitamin and iron blood tests shows as it's been a year since I was tested and then decide if maybe I need to up my T3 again and just stop my levo. It's just a constant juggling act!
Thanks for the advice on yoga my breathing has never been very good that's why I can't run. Hopefully it'll help
Just had another thought about you MissFG, although I noticed nothing else my breathing immediately improved on T3 so maybe it's not coincidental that you feel different since lowering it. My endo says that correcting the T3 should improve absorption and the ferritin is expected to raise. Do you manage yourself or have some medical guidance?
I manage myself but my Endo is supervising me but tbh I need to arrange to see him but as I've been improving I've not made an appt. so it's on my list of things to do. Be interesting to see where my ferritin level is
You may well be suffering from an ALPHA-1 ANTITRYPSIN DEFICIENCY which predisposes one to COPD etc and smoking just makes it a whole lot worse. It is hereditary. It just takes a simple blood test to diagnose and the following link will tell you the whole story!
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